Sight loss after brain tumor op: Hi all. 3 weeks... - Headway

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Sight loss after brain tumor op

Preston20
Preston20

Hi all.

3 weeks ago I had a brain tumor removed from my brain. I spent 11 days in hospital and now I am home. The operation left me with one eye lid not being able to open. The nuero surgeon said it may be swelling that is causing issue or damage to nerves. It may be weeks or months before any improvement. It was also mentioned I may have had a small Stoke whilst being operated on. As I was unable to lift my left arm after the op and my speech was slurred. I regained power in my arm and my speech has improved. Apart from me being tired all the time which was to be expected it's my change of vision which is really affecting me. I have tried to remain positive but this morning I just burst into tears and everything came out. My wife has been amazing and supportive all the way. I know I have to be patient and give time a chance but I am worried sick I will be left permanently this way ending my career and life as I knew it. I don't know where to go from here. Any advice would be appreciated.

16 Replies
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Life will get better, try to rest and not worry about the outcome at the moment. Recovery is the most important thing, it will come you just got to give it time. Ideas about work and life may change but you will adapt. Mindfulness helped me a lot with acceptance and anxiety issues, again that also takes a bit of time but really helps gain perspective of everything in life. It's good you have a supportive wife it will help a great deal. Take care.

Preston20
Preston20 in reply to pinkvision

Thank you for the reply. Patience is key.

Three weeks ……..trust me Preston that's an incredibly short time in recovery terms. After a brain haemorrhage eight years ago I was still in ICU at the 3 week point. Even after discharge another 5 weeks on I was pretty tearful, wobbly and exhausted.

Sight issues are common after brain surgery and can either resolve with time and patience or, if persistent for months, should be investigated by an eye specialist. I was found to have lost some peripheral vision but was told it needed 6 months to settle down before investigation could be carried out effectively.... and it did settle within a few weeks.

Concentrate on recuperating for many weeks yet. Drink loads of water, eat healthily, take regular light exercise without causing too much fatigue, and rest/sleep whenever you feel the need. And distract yourself at this already stressful time with radio/tv programs/music or whatever you fancy. For me it was all those mentioned, along with crosswords, online games and pottering in the garden.

Brains need far, far longer to recuperate than other organs so, the more you commit to that period of recuperation Preston, the quicker you'll see improvements. Stay in touch....

Take care.

Cat x

Preston20
Preston20 in reply to cat3

Hi cat. Thank you for your advice. Many people including surgeon have told me it is a long slow recovery.but I guess I was not prepared for how tired I would feel. I have been listening to stories a bit if TV and reading through a kindle but I think I may have been over doing it. I tried walking 3000 steps a day ( inside) to try and stay active but seemed to have become even more tired... You live and learn. I have stopped that now though. Yesterday I slept most of the day and night and felt better for it.i think the fact that my 1 good eye is working overtime makes me even more tired concentrating. I shall take your words and be patient even though I am frightens x

cat3
cat3 in reply to Preston20

It can be frightening when the aftershocks of brain illness/injury & surgery hit home. We don't have always have presence of mind to dwell on reality during the critical phase ; it's when the commotion stops and we're back home that the "Did that really just happen ?" moments hit.

And with any number of disabling after effects, it can be incredibly challenging ; especially so, when it's one of our basic senses. But inflammation/disruption of the brain requires many weeks or months of rest/sleep which is the finest 'medicine' …….actually the only effective medicine !

I really do get how a vision issue, together with the surreal Covid threat (& curfews) will be causing intense feelings of isolation for you ; I only hope that both these challenges will be addressed soon enough to avoid a widespread mental health emergency.

You're safest on both counts indoors as even walking out has becoming questionable. Once secluded places are getting busier since closing of workplaces. We all need to use phone/social media/forums to keep talking, especially as certain police forces are questioning people's reasons for being outdoors. 😯

Crazy times indeed. I questioned my sanity earlier when (unable to get out/awaiting phone calls) I was walking briskly from the back bedroom, down the stairs, along the hall, across the front room then back up to starting point 5 times to boost my circulation and keep the old joints working ! 🙄

Don't be frightened alone Preston...….we're always here....

Cat x

Preston20
Preston20 in reply to cat3

Thanks cat caring words. I have spent most of today in bed apart from getting up now and then and spending half an hour sat outside for fresh air. How much should I be sleeping though. I feel better when I do

cat3
cat3 in reply to Preston20

Your words …" How much should I be sleeping though. I feel better when I do" …..say all you need to know !

Your brain is telling you it needs to sleep-sleep-sleep and at the 3 week point, where you are now, that's all I did. I didn't move from my hospital bed until around 5 weeks post-op and only awoke to be given copious amounts of water and meals, or for clean linen.

I recall my consultant congratulating me on how well I was doing, whilst all I did was absolutely nothing. Of course once I could stand, physio & OT were introduced, but strictly on an alternating therapy/resting regime.

Listen to your body's demands and respect them for a couple more weeks at least. You'll know when it's time to start testing your limitations when restlessness kicks in !

I'm 8 years on and still overreach my limits and pay the price for a day of two afterwards.

Every time you sleep you're promoting more healing ; so sleep well m'love ! x 😴

Preston20
Preston20 in reply to cat3

Cat thanks. Great encouraging words. Had another night's good sleep feel better for it again. I (we) my wife have agreed that I should stay in bed for now and like you say get up now and again. Seems to be a plan. I still feel swelling on one side of my head so will use that as my recovery barometer. Thanks again

cat3
cat3 in reply to Preston20

Good man. Let's face it...….there was never a better time for hiding away. Drink at least 2 ltrs of water every day to keep your brain hydrated (it'll also ensure you exercise with endless trips to the loo ! ) 😏

Stay in touch m'love… x

Preston20
Preston20 in reply to cat3

Cheers on a lighter note. Anyone who has watched the walking dead series knows it starts with the main character waking up in hospital after an op and the world's gone bonkers. That is what happened to me. Feel like I am in a movie. Don't feel cut off as so is everyone. All the best

cat3
cat3 in reply to Preston20

Oh yes, that's a valid point Preston. Two scary situations fighting for precedence ; comparable to emerging from critical surgery into the start of WW3 ! 😵

Never seen 'The Walking Dead' but I get the point. (Slightly embarrassed to admit I've seen 'Shaun Of The Dead' 3 or 4 times though)🤫

Being cut off makes me even more thankful for the Headway lifeline...… Take care, x

It is not unusual after even an unremarkable brain surgery for your emotions and anxiety levels to be effected. It sounds like you may have had a few problems on your journey. Talk to your care team about how you feel, brain surgery isn't just a physical act.

At the moment life is far from normal, but you may need some specialist help in addition to the physical rehab.

The important thing is to tell people honestly how you feel. Many of us have trod the same path, and talk with the benefit of lived experience.

Take care.

Who can I speak to

You can talk to your rehab team, they can refer you on to specialist neuropsychology/psychiatry, don't worry about the titles they are just word's. The won't say you are mad, put you in a padded room, or give you a new jacket.

Also give Headway a call 08088002244, most of their centres are closed due to the COVID 19, but they are there to talk to.

The Samaritans can be good if you just need to vent.

Pride is something that we all have to put to one side, it goes against the grain, because we are all brought up to put a brave face on.

Keep us posted.

Hi thanks pairofboots. I want to call headway but feeling fragile and more likely than not just will cry. I have moments of sadness that I just cannot stop. I cannot help thinking that I may be stuck with my current situation which scares the hell out of me

Hi, don't worry if all you do is cry, they won't think anything bad of you. If you can't talk ask your wife to talk on your behalf. And get your wife to talk to the rehab team, or the GP.

It is surprising how having someone dig around in your brain can effect you. It is better to address this now.

I battled on thinking I was going to snap out of it, no one said that to me. I thought I was doing a pretty good job of hiding how I was feeling. I crashed and burned. Don't let yourself get to that.

The brave choice is to admit you need help, it will be the best thing you can do. I bet your wife will be happy to help you, and will be relieved. Get the ball rolling, no regrets.

Let me know how you go?

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